Some time earlier in the year Meghan told me she wanted to donate her hair.
Inspired by a few stories of children with cancer, and prior to her own diagnosis (a very mild and stable case) of alopecia areata, she knew something good could come of something so basic so she set about the business of growing her hair.
She knew she needed 10 inches to cut for “Locks of Love,” and she was determined.
I was inspired.
So while she grew hers, I quietly grew mine too. It wasn’t the first time she led me by her example.
And when her resolve strengthened I shared my intention with her, and we were set to donate our hair together in September.
Except mine wasn’t long enough – not yet. And maybe that was a blessing because she got to blaze the trail. She sat bravely as her pony tail was chopped off. She smiled as her curly hair bounced up as if it had been waiting for the weight to be released.
And somehow I think she grew up even more that day. And with that selfless act, she became even more beautiful, more mature.
So, when it was finally my turn, she held my hand. She held my camera. She reassured me that I had done something good.
Sometimes she is so much the grown up that it is frightening.
Sometimes, albeit rarely, she is a ten year old kid. I am working to treasure both.
It’s OK if my hero is 5’2”, wears a size 8.5 shoe, some of my clothes, and was born after the turn of the century right?
I can credit someone else’s Facebook post for even allowing that random wondering to slip into my head. But it has served as a distraction… so I am grateful.
It’s hard for me when I need to choose my words carefully. I usually just lay it all on the line and that’s how I keep it together. Except when your heart is heavy because of matters that just need to be private, that makes it extra hard. So that is why I haven’t been posting much. But without my writing the voices just stay in my head, and then…
But my heart is full for so many reasons, and some I can share with you. Blessed by my consenting 10 year old, as long as I don’t disclose anything embarrassing – to educate the world about “beatingcowdens.”
The headaches have been around on and off for a while. So long that I don’t actually remember. It sounds awful that I as a mom could say that, but it’s true.
I remember the pediatrician saying to me that I should take her to a neurologist because he kept hearing me mention headaches. I remember being overwhelmed by too many doctors. I remember last year blaming the prescription change on her glasses. I remember blaming chelation. I remember blaming allergies…
But the headache hasn’t quit. It’s been weeks now.
It varies with intensity. We are trying to get her to understand and use a pain scale to get some consistency.
But pain is such a personal thing. It’s just not easy. We can never exactly know the pain of another because every body perceives pain differently.
What I do know is that there has been a headache to some extent for over a month and that’s too long.
What pushed me into action was last Monday night. Homework was finished, and I was ready to bring her to swim practice- the place she loves more than anything. And she told me no.
She said she didn’t feel right. She said she wasn’t strong enough. So I let it go and kept her home. But THAT didn’t feel right to me.
Then there was the day that she was waiting in my classroom for the school day to start and she said, “There it is mom! Feel that pulsing?” As she put my hand on the side of her head I got queasy. We all have pulsing in our heads to some degree, but once you have dealt with a vascular malformation – or a few – the pulsing takes you to a new mind numbing level of anxiety.
And when the teacher gave her a shell and she held it to both ears, and said , “I can’t hear it the same in my left ear…” And then there is the ringing that comes and goes…
So tomorrow we head back to Manhattan to visit a neurologist. A little later than the pediatrician would have liked, but we are going. And with every deep fiber of my soul I hope with all my heart that he tells me my girl has the worst fall allergies in the world. And in a few weeks it will all be just perfect.
That’s the story that will get me through the night.
A catch-22 is a paradoxical situation from which an individual cannot escape because of contradictory rules.[1][2] Catch-22s often result from rules, regulations, or procedures that an individual is subject to but has no control over.
-Wikipedia
You know a person could go crazy trying to keep themselves free from toxins. These days it seems to be an all consuming, and virtually impossible task. Sometimes I wish I knew a lot less. Sometimes maybe ignorance is bliss. And cheaper. And a LOT less stressful.
But then again, I think my girl would be a whole lot worse off. And therein lies the “Catch-22.”
Meghan has been seen by a “biomedical specialist,” (insert voodoo, witchcraft, flawed medicine – whatever makes you happy) since she was about 2.
Back in the summer of 2005 things were definitely NOT ok here. I knew it deep down where that Mommy gut nags at you. We had speech therapy. We had occupational therapy. And we had a child who had already been hospitalized twice with chronic viral infections, was not sleeping, was not playing, was not talking, and was most of the time flat out uncomfortable. We also had a vast array of doctors who dutifully collected my Co-Pays and did absolutely nothing but tell me they “didn’t know.”
So, I read. I researched. I altered her diet. I added some key supplements. I started to see results – but not enough.
This doctor, whose office we just left a few hours ago – over 8 years since our initial meeting- got to know Meghan. He told us he could help. And he has.
We have worked together through dietary interventions. Supplements. IV treatments. Countless blood tests. And, when we needed it – Xrays, and guidance towards the diagnosis of “milk of calcium” of the gall bladder at age 3.5
He has been my sounding board through lots of ups and downs. I have never, and will never take any one person’s word on what I should do for my daughter – doctor or not – but he is one of the opinions I value highly.
He had the gumption to prescribe digestive enzymes after YEARS of horrendous stool and horrific stomach aches. “We don’t need to biopsy the pancreas. Sometimes we just need to use our heads to see what works.” Not too often these days will you find any medical professional with that confidence or drive to do what is right.
Through the years we have visited his office at least 3 times a year for lengthy consultations. He has suggested countless things to help aid Meghan’s immune system, her pain, her tendency towards chronic fatigue. I have listened to many, and ignored a few. Conversations have evolved over the years as we have each stayed up to date on current research.
The initial diagnosis of Cowden’s Syndrome seemed to bother him a great deal. He was bothered by the ramifications of the syndrome, but also by the fact that there was no way this was “all of it.” Meghan “doesn’t fit in a box,” he would always tell me. Never let them try to put her in one.
And, perhaps truer words have not been spoken. As we have navigated the world of Cowden’s Syndrome, I have been acutely aware that there is still “something else.” But, since we are yet to put our finger on it – we continue doing the best we can.
Cowden’s Syndrome involves screening tests. Regularly. For cancer, and vascular malformations that can form anywhere at any time. X-Rays and CT scans are discouraged because of radiation exposure and a fear that cells can be “tripped.” So MRI is the test of choice. MRI with contrast that is. Gadolinium to be exact.
I’ll get back to why that is important in a bit.
We have spent the last 2 years especially, (but really the last 5 or so for Meghan considering the AVM in her knee was discovered LONG before the Cowden’s Syndrome diagnosis) being scanned. In July Meghan had an MRI ordeal that involved 4,000 images, 3 hours, 2 tubes, and 3 doses of contrast dye.
We have spent the last few years dealing with a rapidly growing child whose pains seemed to be increasing exponentially. We have gone from treating with Advil to treating with 200 mg a day of Celebrex.
We have spent the last few years trying to help her stay calm- only to watch her anxiety mount. In September she was diagnosed with Alopecia Areata– an autoimmune condition that causes hair loss. Fortunately for us it seems to be contained to a small area, but it is an unnerving diagnosis still the same.
We understand the role of autoimmune disease and stress, and toxins. We understand the role that stress can play on a genetic mutation of the PTEN (tumor suppressor) gene. We understand that there is external and internal stress.
We do what we can to control stress on the body. We make sure she has “down time.” We try to help her get rest. We got her involved in swimming, a sport she loves. We make sure she eats a largely organic diet free of the foods she can not tolerate like gluten, dairy and soy. We eliminated almost without exception preservatives and dyes. We bought new pots and threw out the plastic plates we used to use sometimes.
We started giving her ISAGENIX, the organic superfood that is as pure as I seem to be able to find.
And even at that – there is an awareness that we can NOT control it all. There is an awareness that by whatever mechanism that is broken, our girl does NOT detoxify properly. We are aware of toxins in the air, in our soil, and even in our filtered water. We are aware that her body is confused by this world we live in, by the GMOs that are even hidden in her organic diet.
We run, like Indiana Jones, out in front of the boulder, in constant motion. One stride ahead…
Chelation
Chelation therapy is a proven treatment for lead poisoning and poisoning from other heavy metals.
The term has been spoken over and over again by the “bio medical doctor.” Chelation is the concept I found every single excuse to overlook and ignore. The idea shook me to my core.
The turning point – Alopecia Areata and the words I had heard him say to me for years, “She is primed to become an autoimmune train wreck. Let’s try to clean her out.”
She went for her first treatment last month. After the treatment there is an 8 hour urine test to measure the toxic metals excreted.
She went for her second treatment today and I got to look at the printout of last month’s urine analysis. So, even as I held her, and she wailed in pain, and two veins rolled before they got a good one, my resolve was strong.
There are several metals that were high. None of that made me happy. But the most disconcerting of all…
The reference range for that MRI contrast dye Gadolinium I mentioned earlier is <0.4. Her output was 190. No I am not forgetting a decimal.
Gadolinium. Necessary for the cancer and vascular screenings set to be part of her life forever. Except apparently her body can’t seem to excrete it.
I’m not exactly sure how the idea got into her head. At some point Meghan learned it to be possible to donate your hair to make wigs for people who had no hair. And she decided that she wanted to do it.
For a bit of time it was talk. We spoke about when it would be a good time, if her hair was long enough, and how it would feel to lose so much hair. Then she got serious.
Sometime right after school ended she decided it was time. So, we went to a new hair salon and had her hair measured.
“Close,” they said. “Come back in about 2 months.”
And, as summers go, time passes and 2 months is gone. We made the appointment for today so she would have time to “adjust” to the new hair if she wasn’t happy.
Before…Almost ready…
She was anxious but determined. Confident that it was the right thing to do – she bravely sat in the chair. Her hair was measured to ensure it reached the necessary 10 inches.
Then, even I held my breath as the pony tail was cut off.
And as the hair fell down, the smile of relief sprang up. She saw the life bounce into her hair. She knew it would all be OK.
As she looked at her new cut, and adjusted to the reality that she had just done something HUGE for someone in need, I couldn’t help be overwhelmed with pride.
Once again, my girl led me by example. Once again her bravery is unmatched.
You see last Friday we found a small bald spot on the top of her head.
Yesterday Meghan got the formal diagnosis of “Alopecia Areata.” It hasn’t got a blessed thing to do with Cowden’s Syndrome. Although being affected BY Cowden’s Syndrome has made us all more aware of the needs of others who suffer. The denim ribbon we wear each day is a reminder of the Global Genes Project, and a search for cures, or at least awareness of ALL rare diseases.
Stress can trigger this unpredictable autoimmune hair loss.
We can hope the spot was a reality check for all of us. A reminder to try to take some deep breaths along the bumpy road we travel.
We kept it from Meghan for the weekend, but as we headed to the dermatologist Tuesday the conversation had to happen. We go through too much here not to have each other’s trust. I answer questions as briefly as she allows, but I always answer honestly.
There is no way to know what path it will take, if this will (hopefully) be the end, or the beginning. Alopecia Areata is a life-long condition. It may stop now and rest forever. Or maybe it won’t. We just don’t know.
But we are kind of used to that around here. There are no “plans” anymore. Only guesses, and hopes, and prayers.
And thankfully we live with the confidence that there is a greater plan than any of us can wrap our heads around.
For now, some beautiful little girl will soon receive a wig made in part by Meghan’s beautiful, curly hair.
I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that You can give me rest
So I cry out with all that I have left
Let me see redemption win
Let me know the struggle ends
That You can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m wornI know I need to lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have leftLet me see redemption win
Let me know the struggle ends
That You can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn….
It has definitely been a few extra stressful weeks, and not at all the relaxation we had so desperately hoped for and needed in June.
But, like it or not time marches on, and here we are in the middle of Labor Day weekend.
When we started the summer my daughter had 2 basic requests.
1. Go to the beach.
2. Go to Philadelphia.
Not so hard right?
And then we looked at the calendar about to change to September and realized between appointments, procedures, tests and surgery – we never got either one done.
Stress is very individual in how it affects each of us. We all have stress. We all deal with it differently. But I think that the reality that stress can, and does manifest in real physical illness is often lost on us. Especially lost is the harsh reality that stress can make our CHILDREN sick – until it smacks you in the face.
It became clear this week that the stress is weighing heavily on Meghan. She is one tough chick, but there is only so much the mind and body of a really cute, smart, well behaved 10-year-old should have to endure. It is now the top priority of her father and I to actively work on lowering her stress level.
We started today.
Months ago we purchased tickets to see the Contemporary Christian band, “Tenth Avenue North” in concert in Ocean Grove New Jersey on August 31st. We decided to make a day out of it – or a half day at least!
We let Meghan sleep as late as her body needed. (Falling asleep has become terribly hard again.) Then she got to watch some TV. I ran a few errands, and around 3 with a cooler full of cold cuts for “dinner” we set out to surprise her with a trip to the beach.
We never told Meghan our plan, although it was obvious she was secretly hoping for the beach. We just know too many factors can get in the way on a moment’s notice. So, it wasn’t until we were looking for parking that we even told her.
By then it was 4:15. The perfect time to take a kid who is not really sure she likes the beach, to the beach.
Crowds were waning, and as we set up our blanket she had some time to adjust to the seagulls, and the sand between her toes.
Forever my texture phobic kid, truth be told the sand in the toes was the reason I stopped really bringing her to the beach years ago. But today there was a mission to put her toes in the water and collect shells with Mom and Dad.
She walked with Mom. Then she walked with Dad. And for a few glorious minutes I laid my head on the towel and remembered my childhood days in Ocean City,NJ. I listened to the waves, felt the sand between my toes, and felt such PEACE!
Don’t hate my polka dots – my husband did them for me! 🙂
We have a small bag with some beautiful shells.
We even played some with her Nerf frisbee. There was laughing, and smiling, and a good deal of stating and restating that the sand on her toes does NOT feel nice.
With some gentle prodding she came around, but was perfectly happy with 2 cool hours on the beach. So glad I didn’t get a full day plan in place!
What we did NOT do was have a picnic lunch on the beach as planned. Instead, we ate in the car. Sea gulls, being nothing more than glorified pigeons would have undoubtedly created significant reflux for my girl. So, we had Board Head chicken breast in the car, with potato chips, and had a great conversation – minus the sea gulls.
We walked the streets of Ocean Grove for a bit, and I saw the sign:
And somehow I knew we had done things right – today.
We headed over to the Great Auditorium for the concert. We happily bought our girl her first concert T-shirt, and her “Tenth Avenue North” Bracelet. In-scripted inside the bracelet are words from the cover song off their newest CD, “The Struggle.” It reads, “We are free to struggle, but we’re not struggling to be free.” She is sleeping with it on right now.
The show was amazing. Meghan was enthralled. They are quite the performers.
Meghan and I often sing along to their songs on the radio. Our favorites are “Worn,” and “Healing Begins”
“Healing Begins”
So you thought you had to keep this up
All the work that you do
So we think that you’re good
And you can’t believe it’s not enough
All the walls you built up
Are just glass on the outside
So let ’em fall down
There’s freedom waiting in the sound
When you let your walls fall to the ground
We’re here now
This is where the healing begins, oh
This is where the healing starts
When you come to where you’re broken within
The light meets the dark
The light meets the dark…
The lead singer also spent some time talking to the audience about God’s plans. He told the story of a car accident his Senior year of High School where everyone thought he would die, and no one thought he would recover fully.
That 32-year-old man with a wife and 2 daughters spoke definitively tonight about believing God will use the adversity to grow greater things. He told us he touched a guitar for the first time at 18 while he was waiting to heal from his accident. Clearly, God had a plan.
I was touched by the story, but more moved by Meghan’s reaction. She HUNG on his every word. She was thinking – deeply.
Then she asked if I had any of the “Cowden’s cards.” And, God bless this girl she walked right up to the stage and handed them to one of the back up band members… alone.
“I just thought they should have them Mom, in case they want to read…”
This card was created out of her need to “teach” others about Cowden’s Syndrome.
You know the irony with this darned Cowden’s syndrome is that what you NEED is to be away from doctors, because they cause STRESS which prompts other conditions that cause you to NEED doctors.
So, a few days after the hand became free, we are on the hunt for the solution to more developing problems.
Stress. We do what we can to deal.
We use music. We enjoy time together.
We try harder to get it right. We hug each other. We hold each other.
I still haven’t given up on a road trip to Philly. (If only I can get my navigation system to work…)
Since Meghan’s surgery last Tuesday, she and her wrapped hand, and foam “Carter’s Block,” have been sleeping in the king size bed with me, while Daddy has slept in the twin in Meghan’s room.
She usually needs a little bit of room, as she isn’t the calmest sleeper, but we knew with the new foam addition, there would be no way the three of us could fit. So, with Meghan came her pillows, and her iPad.
Her iPad has a playlist that she plays through the night when she sleeps. I always knew it was on, but this past week, as life has made sleep a bit elusive, I have gotten opportunity to listen to this 23 minute segment several times. Yesterday I looked up the lyrics, and as usual I was in awe of what she had assembled.
In our house we listen mostly to Contemporary Christian music. We are Christian, yes. But typically the type that tries to spread the love by example rather than with a Bible in your face. That being said, the move to Contemporary Christian music evolved after Meghan became old enough to hear, sing, and understand the lyrics, and the DJs on the radio.
I was, on more than one occasion, appalled at the level of exposure my then 5 or 6 year old child had to things I wanted her sheltered from a bit longer. So, I switched the station. And I kept it there.
Now, don’t misunderstand, She is not bound to listen only to Christian music. She can pretty much listen to whatever she wants. She has an Itunes account and downloads music of her choosing, with our permission. And, there are plenty of afternoons you will hear a good Classic Rock station blaring out our car windows. But, like anything else, my initial changing of the radio station led to conversations. And I like conversations.
Meghan became aware that many of her friends at school were familiar with other musical artists that she had never heard of. So, it became practice that every time she brought home the name of an artist or song, as long as it wasn’t overly offensive – we would buy it. But I loved that our conversations got her looking at lyrics, hearing what she was singing along to, and taking responsibility for her choices.
I know that music is a very personal thing. I will not be the Mom who is in denial, or tries to over regulate. It will lead to rebellion and there is no need. I will talk to my daughter regularly about valuing herself, her body, and other people. We will talk about what lyrics mean. Then, she will, as preteens do – do as she likes.
But for now- the “sleep” selection on her iPad is a powerful collection of 6 Contemporary Christian songs.
The first is “Stronger” by Mandisa that begins…
“Stronger”
Hey, heard you were up all night
Thinking about how your world ain’t right
And you wonder if things will ever get better
And you’re asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather
Oh, don’t hang your head
It’s gonna end
God’s right there
Even if it’s hard to see Him
I promise you that He still cares
Then, it moves on to Kutless, “That’s What Faith Can Do”
Anyone can feel the ache
You think it’s more than you can take
But you’re stronger
Stronger than you knowDon’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason
For someone not to tryEverybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing
Seek justice
Love mercy
Walk humbly with your GodIn the war of the mind
I will make my stand
In the battle of the heart
And the battle of the handIn the war of the mind
I will make my stand
In the battle of the heart
And the battle of the handWe were made to be courageous
And we’re taking back the fight
We were made to be courageous
And it starts with us tonight
We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we’d have faith to believe’
Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It’s not our home
And the last 2 are by a somewhat spunky artist called Francesa Batistelli
“Motion of Mercy”
That’s the motion of mercy
Changing the way and the why we are
That’s the motion of mercy
Moving my heartLiving for the lost
Loving ‘til it hurts
No matter what the cost
Like You loved me first
That’s the motion of mercy
God give me strength to give something for nothing
I wanna be a glimpse of the Kingdom that’s coming soon
I lost my keys in the great unknown
And call me please ’cause I can’t find my phone
This is the stuff that drives me crazy
This is the stuff that’s getting to me lately
In the middle of my little mess
I forget how big I’m blessed
This is the stuff that gets under my skin
But I’ve gotta trust You know exactly what You’re doing
Might not be what I would choose
But this the stuff You use…
…So break me of impatience
Conquer my frustrations
I’ve got a new appreciation
It’s not the end of the world…
I know everyone’s taste in music differs greatly, and I do not expect that anyone will listen to all 6 of these. But I encourage you- choose one. Any one that speaks to you.
I have been struggling to get to sleep, but I will miss the soothing repetition of some of the most powerful songs I know when the stitches come out tomorrow. One more night. Then everyone gets back to their own beds!
We should be professionals around here. We should just get up, get going and move on.
But we are human.
We hurt, inside and out.
We get tired, and lonely.
We understand the tired and lonely that others have too – but some days it doesn’t make ours better.
Some days its hard to look at things from someone else’s point of view.
And that’s OK.
This one is a favorite of a dear internet friend 🙂
Meghan is full of exhaustion and pain and conflicting emotions.
It’s annoying to realize you blew your whole summer at doctors and in surgery.
Thankfully we snuck in that Disney trip.
I can, and I do, take solace from my Facebook friends- the ones I know for real, and the web of Cowden’s survivors I have become intertwined with.
She has a smaller network. Mostly because I don’t think she is capable of realizing the effect she has on the lives of so many others.
Yet, she is my hero. And my rockstar.
I shuffled her around these last few days a lot more than I wanted to. But, she likes to stay close by me when she is hurting.
So yesterday we picked up the car. Apparently the “Magic Wand Guy” (Field tech) ran out of pixie dust. He declared my car “not broken.” Ironic because 2 weeks ago the same shop who held it for 10 days said they couldn’t fix it.
It’s definitely still broken. On to the arbitration with the Better Business Bureau. Just in case someone thought we might rest. No worries. Gloves are on.
She went with Felix and I for our physicals last night.
Then this morning, she went to work with me for a bit, and to pick up some of Daddy’s medical records. (Really WHAT was I thinking staying close to home for a doctor?)
She is tired. But she smiles. And she hugs us. And she asks for pain medicine. And she wiggles her fingers. And she looks at her pool, and the calendar, and she feels the inevitable.
I can’t stop it. No one can.
So we keep busy. We rest. I stay close by. We giggle and make jokes. If I had to “lose” a summer, I couldn’t have lost it with a better young lady!
Since before she could talk we have been working to help this kid become more aware of her body. She can troubleshoot what works for her. She can tell me what foods and medicines help her or hurt her. Every day she becomes more keenly in tune with herself. Its necessary. That is how we keep her healthy.
My heart always gets heavy for my friends whose children, despite everyone’s best efforts can not articulate their needs, pains, desires, or emotions. Those are the situations where doctors might miss something- even if they are trying. Those poor children might suffer needlessly if no one can determine the source of their discomfort.
But not Meghan. If you will listen. She will tell you. If you pay attention. You will understand.
If she hurts- the whole world might know. If she doesn’t hurt anymore, even 5 minutes later, its like it never happened.
That’s it. Plain and simple.
So when she hurt her hand June 4th, I kept waiting for it to get better.
I played tough for a few days, but it still hurt.
Then we tried ice, heat, brace, no brace, different brace – but the pain persisted.
And on we went – to the vascular surgeon, for the MRI/MRA, to the orthopedist, to the local hand surgeon. Each one finding a reason to dismiss her, and this pain that persisted.
Pain doesn’t persist. Not like this. Not with her.
And, when you have Cowden’s Syndrome, any pain that persists more than 10 days consistently really should be evaluated. You never know where those tumors may grow.
But the MRI, the three hour MRI with 4,000 images was negative. (Although I still have my doubts.)
And, Meghan calmly told the vascular surgeon she thought it was an AVM. He said no.
As the pain mounted over the weeks that followed, and we bounced through other routine follow ups that seemed to swallow up our summer, Meghan took solace in Dr. Jill.
You can’t put anything over on Dr. Jill, but she knows kids, and she knows Meghan.
“Look at this,” she said to me. “It has its own blood supply. That’s why it stops hurting when she puts pressure on that mass. She is cutting off the blood supply.”
Meghan would smile, knowing she was understood – at least by someone.
“Vascular pain goes up the arm, orthopedic pain doesn’t,” she would almost mutter to herself.
And I knew if they were BOTH sure, then I was sure they were right.
I emailed her oncologist, and her genetecist. I sent them pictures. “Biopsy those,” I was told in no uncertain terms.
So Dr. Jill wrote a detailed professional letter to a local orthopedist. I am still not sure he understood all the words.
Then there was the local hand surgeon, who read the letter, and just spent the visit looking perplexed and bothered. The MRI report was negative, his Xray was negative, and there was this bump below her middle finger. He sent us away – apologizing for not helping, but convinced there was no need for surgery.
That was the day Meghan coined the phrase “Donkey Butts!” And I couldn’t blame her.
I went right home from that visit and sent a desperate EMail to the oncologist again. This time I asked for a referral.
She is a woman of few words. Her reply was a link, and the words “Go here.”
So, I called and made an appointment. They took our out of network benefits. We got in the day before vacation.
He looked at Meghan. He talked to her. He sent her for more Xrays. They were negative. Then he looked at her hand again. He told her that he knows all about kids and how well they know their bodies. He told us he treats a few boys who grow bone instead of soft tissue tumors. He told her that the boys ALWAYS know where the problems are. She brightened.
Then he drew a very logical picture of the hand, and traced out the main ligament and tendon. He showed the connection from the soft tissue tumor to the painful wrist spot. He let her feel it, and he told her she made sense. She smiled a huge smile.
Finally a doctor who DIDN’T remind me of this one!
The he said to us that even though the Xray is negative, sometimes surgeons have to use their heads. Clearly the tumor on her hand was causing trouble. Clearly it had to come out. Exactly what that would mean once he got in there would have to remain to be seen. Relaxed and encouraged that someone was using their head, we scheduled the procedure and left for Disney.
Disney had its ups and downs, and one of the struggles was the frequent hand and wrist pain. Meghan is in pain so often, she can differentiate between the chronic pain, like her hips and knees, and the pain that she can’t stand, like her wrist and hand. Chronic pain is absolutely exhausting.
Today was the surgery.
We went to a LOVELY outpatient facility on 42nd Street. The place was clean, the reception was smooth and effortless.
The nurses were darling, every one of them.
The anesthesiologist instilled comfort, and the surgeon, Dr. R was warm and calming.
The procedure lasted longer than I expected – almost an hour and a half.
I wasn’t surprised to hear the words that have become normal. “It wasn’t exactly what I imagined, but I am pretty sure I got it all.”
A soft tissue tumor, with roots, AND an AVM (arteriovenous malformation) with its very own blood supply!
So many thoughts went through my mind – including, “SHE KNEW IT ALL ALONG!,” and “THANK GOD FOR DR. JILL!”
I was grateful for Dr. R, his patience, his trust in Meghan, and his ability to get it done. I was also instantly tossed into a new level of worry. See, all along they have been insisting the AVM in the knee was an isolated incident. I shouldn’t worry about more cropping up. Well one just cropped up. Game changer.
I was thinking about the rock wall she climbed June 4th, and even after all this turmoil, I am still glad she did it. Although we now almost undoubtedly know that the AVM was under the surface all along, and the bruising her hands took caused her body to “hyper heal,” and likely led to more blood being pushed towards the AVM. The soft tissue tumor erupted some time later.
While the exact sequence of events doesn’t matter, a few things do.
Meghan and Dr. Jill are really intuitive.
AVMs can take place in multiple spots.
Dr. R had to scrape the scar tissue off the ligament, and tendon and nerve in the hand.
Meghan will need quite a bit of therapy (after 9 days of keeping the hand wrapped) to get her mobility back.
I absolutely can not wait to get the pathology report and share it with a few doctors who blew off my girl.
No matter how many times we practice this scenario, for surgery, for biopsies, for tests- it is no easier now than it was the very first time.
And boy have we had practice!
This morning, as Daddy walked with her to the operating room,(our routine firmly in place – Daddy does the OR and Mommy does any overnight stays) I was still struck with the distinct feeling that I had been kicked in the stomach with a large pair of steel tipped boots.
This one should be ok. 9 days wrapped and dry. Stitches removed, and we should see progress.
As long as…
Well now we fidget and pray and keep busy. There will be time for the rest.
A short time before we headed to Disney, I wrote about taking out Meghan’s push chair for an appointment in Manhattan. She was terribly bothered by the rude stares that greeted us that day.
As a result we talked, a lot. And, like she always does – she comes through those conversations blowing my mind with her introspective maturity.
Don’t misunderstand me. I sometimes worry that my 10 year old is such a deep thinker. I am acutely aware that she has way more on her plate than she should, and she handles with grace and poise a life that would leave many adults weeping under their covers. I wish she told me everything. I know she doesn’t. My heart often breaks for the burdens she carries.
Yet, she is just so amazing.
After we spoke about the rude “starers” she talked about wanting to have a way to let them know about Cowden’s Syndrome. She wanted to raise awareness.
This card was created out of her need to “teach” others about Cowden’s Syndrome.
So she gave her ideas to Daddy and he created this card. We used the logo from the “Global Genes Project,” an organization that has been dear to Meghan since her diagnosis. http://globalgenes.org/
Meghan wears proudly the denim ribbon created for her by a family friend when she expressed a desire to have a ribbon. something she could wear that would represent her.
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”
She dreams of one day seeing another child wearing this symbol. She wants it to become as common as the “pink ribbon.” Because, there are about 7,000 rare diseases, and 1 in every 10 people is affected by one. Many of these diseases are genetic. As we learn more about other rare diseases, Meghan understands the need for the rare disease community to unite. So little research is done on so many of these diseases that they remain poorly understood and under funded.
As we packed for the trip – Meghan asked if we could print some of the business cards for her to bring to Disney. She wanted to be able to hand them out. She knew people from all over the world visit Disney, so it would be a great place to spread the word. 500 cards later, I made sure she had all the tools she needed.
What happened next was just another example of how easy it is to be proud to be her mother.
Meghan decided that instead of getting an autograph book this year, she would take pictures with the Disney characters with her cards.
She also spontaneously struck up conversations with complete strangers all over the parks. She would approach cast members, wait staff, photographers, and guests. She spoke to people from the US and well beyond.
And every time she spoke my heart smiled.
She is an incredibly articulate young lady. She explained Cowden’s Syndrome through the eyes of a ten year old to almost 200 people.
Some of the most memorable included a man and his wife and their service dog on the bus to Downtown Disney, and a helpful cast member from Puerto Rico outside the fitting room as she tried on her Merida dress, and a Disney Photopass photographer whose genuine hug was so heartwarming.
Those were just a few. She spoke to so many people over the course of our 9 day trip that I have no doubt there is a greater awareness of Cowden’s Syndrome in the world than there was just 2 weeks ago.
She will tell you she is not a public speaker.
She might even try to tell you she is shy.
I will tell you she is flat out amazing, and that she is going to do already doing great things.
This child will make the world more aware – one card, and one conversation at a time.
These are Just a few who learned something new this week!
beatingcowdens 
